Tuesday, June 21, 2011

Back to Square 1, maybe 2....

I'm livid at the moment.. ABSOLUTELY LIVID!!!!

It may not be much to others but we have been working towards getting Dommy's Metatarsus Adductus and Clubbing of his feet corrected in a way that would avoid long term multiple surgeries and pain - and we were winning the battle! We got his feet to a situation where they were straight, they were no longer rigidly stuck in a deformed position and he was able to wear shoes designed for regular children...

Now, after being promised that there were physio's here in Mt Gambier who knew how to continue the treatment and continue to correct his feet we discover there is NONE!!! No one!!! The one who said she could and would was reading information off the internet before his appointments to see what she was meant to be doing!!! She admitted this to us, that she knew nothing of the Ponseti method of treatment for clubbing and Metatarsus adductus!!!

The curving of the feet show
Domeniks Mettartarsus Adductus, January 2010

"they" (being the physio and podiatry department of the local hospital) decided that he was beyond their training and that his feet were reverting to rigid and tightening into a boomerang shape again and he needed to be referred to the Royal Womens and Childrens Hospital in Adelaide... This decision was made almost 8 months ago!!!

His toes should NOT be pointing this way
while he is standing,

...also there is a 'roll' on his ankles
from the mild clubbing - this became more
obvious as he grew. January 13, 2010

We have been told several times that referrals had been sent. I have followed up myself with the hospital in Adelaide several times after being assured they were sent and they reported they have not received them. Now let me get this straight so you can get a sense of my frustration. Referrals have APPARENTLY been sent regarding this by the physio department - twice, the paediatrician - twice and the podiatrist - once... That makes (if they are telling me truth) 5 referrals that were sent regarding Domeniks feet to this hospital - so why are they not getting there??? Why have we not heard anything?!?!?!!

I found out why today....

THEY DIDN'T SEND THEM!!!!! Not just that, but apparently they CAN'T send a referral for him!!! It's taken all this time for them to bloody well work that all out (yeps, just a little bit mad and incredulous here at the mo) Apparently the only persons who can refer Domenik through is a GP via a special online form or an ortho surgeon!!!

I'm disgusted with their misrepresentation of the situation and hoping against hope that these further delays in getting treatment wont result in the multiple surgeries that we have been trying to avoid! It was bad enough to begin with that we were constantly told he would grow out of it... The relief we had when he was responding to the treatment when we were warned that he may not as he was an "older" starter to Ponseti... And now this...

Domenik hated his casts as he couldn't walk in them,
but he would always smile throughout his treatments...
January 21, 2010

The ability to walk, run and jump without pain or distress is something that we all take for granted... It is something I wanted my baby boy to experience and be able to take advantage of... Now I'm not so sure about it... I know for myself that my foot has never been the same after I broke it and it required surgery. It has numb spots and can tell me when the cold winters rains are on their way and to be frank at times it downright aches! Something it never did before it required surgery... I really don't want any of my kids to have to feel that pain and we were getting there with Domenik! We were actually able to start to believe that he wouldn;t require surgery!!! Now, well the podiatrist here has already said that he will be too old to go back into AFO's and boot and bar from scratch and that we're looking at multiple surgeries as he grows to loosen tendons to stop his feet from curling at the very least, as well as a lifetime of special footwear and orthotics... I know it's not the be all and end all, if this happens it happens we can't stop it and will have to comply as there are no other choices now...

We had many nights of broken sleep,
cramping and frustration with his
boots and bar, but they did their job!
February 17, 2010

It just breaks my heart that my boy may now be subject to these operations we'd been trying to avoid and succeeding at all because of the stupid physio department here at the local hospital and how they have mis-represented themselves to us... IF they were honest and told us from the outset they could not deal with this the Burnie hospital would have referred Domenik to the Royal Womens and Childrens... now they can't and we're over 12 months behind with his treatment...

This was his beautiful straight foot after
coming out of the 5th casting Feb 11, 2010
We moved to Mt Gambier 2 months later,
"they" stopped ALL his treatment within months
of moving here...

His feet had reverted back to their 'boomerang'
shape within 3 months of moving here :(

Now try and tell me that I shouldn't be upset for my little boy....
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